Abstract Introduction Previous surveys of individuals with celiac disease (CeD) reported diagnostic delays and a desire for improved education among healthcare and food industry professionals. Given recent changes in awareness, screening, and the gluten-free industry, reassessing current challenges and burden is warranted. Methods An online survey was distributed to Canadians reporting a diagnosis of CeD or other gluten-related disorders. Collected information included demographics, symptoms, diagnosis, and management of the gluten-free diet (GFD). Cumulative link models estimated the association between demographics with time from symptom onset to diagnosis, difficulty following the GFD, response to gluten consumption, frequency of symptoms, and likelihood of symptom recovery. Results Among 6260 respondents, 77.6% reported diagnosis by biopsy compared to 22.4% reporting diagnosis by serology only. Mean age at time of survey was 52.3 years (±17.0), 78.7% were female. The majority (69.6%) reported delay from symptom onsetto diagnosis, ranging from more than 2 years to over 20 years before diagnosis confirmation. Factors associated with diagnostic delay were female gender (P < .001), racialized persons (P < .001), rural residence (P < .001), and lower income (P < .001). Greater difficulty following the GFD was identified among those with lower income (P < .001). Factors associated with increased symptom burden and less symptom recovery were female gender, rural residence, and lower income (all P < .01). Conclusions Contemporary analysis of the largest, nationwide survey of Canadians affected by CeD reveals ongoing challenges related to diagnostic delay. Risk factors for diagnostic delay and difficulty following a GFD were identified and should be the focus of future research and intervention.
